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msimon3

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Everything posted by msimon3

  1. Aaron, many of the symptoms you describe are typical of Lyme disease. My advice is to discontinue the homeopathy, and instead find a doctor who will treat Lyme disease with antibiotics. Doxycycline and Metronidazole have been shown to be very effective at treating Borrelia infections, and those antibiotics were the most effective in my experience. Here is a relevant study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
  2. msimon3

    My Sons tics, sharing our story

    kathyw I will private message you
  3. msimon3

    My Sons tics, sharing our story

    Edsonr, reading your post felt like reading my own memories. I have read many stories on this board over the years, but none as similar as yours is to mine. So I respond here with hope and urgency, as I wish I had received more information and better guidance ten years ago when our child first exhibited tics. Unfortunately, we were initially guided by two pediatricians to follow the approach of "do nothing, it will go away" which we did for two years. That guidance was bad, and following it was a critical mistake. Over time, the original symptoms of motor tics slowly grew into a variety of symptoms, which included loose stool, odd rashes, slight recurring fevers, joint pain, numbness, lethargy, and moodiness. Symptoms that oddly waxed and waned. Symptoms that seemed to get better ironically during common colds. Seeking answers, we saw several doctors who took us down paths that led nowhere. Maybe it was diet. Maybe it was allergies. Maybe it was anxiety. Maybe it was an environmental trigger. Maybe it was Autism. Maybe it was Tourette's. Time spent with all those doctors did not help us, and meanwhile the illness advanced. Faced with no good options, my wife and I continued to research and seek doctors who might help. Taking what felt like a big chance, we met with a PANDAS/PANS doctor in NJ who confirmed the immune system was involved and showed sustained signs of infection. This doctor also recommended we consider Lyme disease, and ordered a tick-borne disease panel from Igenex. The results from that panel indicated immune markers for two tick-borne diseases. We quickly moved on to a Lyme-literate MD in Washington, D.C., who confirmed the our child's symptoms indicated Lyme disease. After several rounds of antibiotic therapy, our child gradually became better to the point of being symptom free. Nine years had elapsed since we saw the first motor tic. So is your situation the same as ours? I don't know. The are many potential causes of tics, and finding the true cause is a challenge. We started in a similar place as you are now. We saw similar symptoms and we were given similar advice. Ultimately every doctor (except the last two) failed to consider the set of all symptoms and correctly identify the disease. I hope you can find the cause of your child's tics soon. I would be happy to provide you any additional information about our history, and can do so over private message. Some useful links about Lyme and other tick-borne diseases: http://www.ilads.org/ https://www.columbia-lyme.org/lyme-disease
  4. msimon3

    Jemsek Clinic?

    Dr J = Dr Jemsek in DC?
  5. msimon3

    Lyme tests?

    If your doctor is not familiar with Igenex then perhaps consider finding a LLMD. Regardless of which doctor you use, Igenex will characterize results and indicate positive or negative status which we found helpful. If you suspect a tick bite, the Igenex Tick-Borne Disease panel will test a variety of infections likely from a tick bite. Keep in mind that ticks can transmit a variety of diseases, and testing for diseases other than B. burgdorferi might be helpful in confirming a tick bite if you get positive results. Igenex should be able to tell you the specificity and sensitivity for each test to help you understand the potential for false positive results and false negative results respectively.
  6. If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters". The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease. You will need to make a decision and choose a side. If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, such as Flagyl. Here are some links that may be helpful: http://columbia-lyme.org/patients/ld_chronic.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/
  7. I recently observed a similar reduction in tics when lying flat. It's very curious.
  8. msimon3

    Absolute Neutrophils low

    Low neutrophils is called neutropenia, and it may have several causes: https://en.wikipedia.org/wiki/Neutropenia For years we observed perpetually low neutrophils and high lymphocytes that coincided with clinical symptoms. Initially we suspected PANDAS but instead we found infection with Borrelia (Lyme disease) and Ehrlichia. After treatment, the clinical symptoms were greatly reduced and the neutrophils and lymphocytes returned to normal values. We used neutrophils and lymphocytes as one measure to determine the level of infection and efficacy of treatment.
  9. msimon3

    Skin Numbness

    Numbness is a symptom of Lyme that we experienced as well. We didn't noticed hot/cold however the skin has different sensory receptors for hot and cold than it does for touch and pressure. http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html
  10. p66 (kDa) is inspecific to Borrelia, meaning it could be an antibody to other bacteria. Regarding why you would use Igenex for a Western Blot test, the short answer is that it will give better positive results that a CDC-based test that Labcorp or Quest offer. The Igenex test looks at two strains of Borrelia instead of one and it tests for more bands (segments of protein to which an antibody will 'stick') -- in particular bands 31 and 34 which are specific to Borrelia. The link above from ILADS is a good one. Here are some other helpful links: http://www.columbia-lyme.org/patients/ld_lab_test.html http://www.columbia-lyme.org/patients/controversies.html http://lymediseasechallenge.org/testing/ http://www.igenex.com/innovations3.pdf Keep in mind that a negative Lyme test (Elisa or WB) doesn't mean much. It means only that an antibody to a single protein on the Elisa was not found, or the right combination of antibodies were not found on the WB. A PCR (DNA) test is also very specific if positive, but also suffers from false negatives when no Borrelia is found in the sample even if Borrelia does reside in the body. The only reliable diagnosis of Lyme disease is a clinical diagnosis done by a competent and credible doctor.
  11. I am sorry to hear about your experience, and it must have been incredibly disappointing to be treated in that manner. Sadly, I count myself among many parents here who go through similar experiences as we try to locate a doctor who is credible, knowledgeable, and helpful. Once you find a good doctor, one who listens, things will get better. I have used sites like vitals.com and healthgrades.com to research doctor ratings. Those sites might be worth a look for leaving feedback about your experience. Regarding your daughter, have you considered seeing an immunologist or infectious disease specialist? It may be helpful to run some blood panels and look for signs of chronic infection. We did just that in the past, and we used those results as validation that an active chronic infection existed. Regarding the comments the doctor made about autism, he doesn't seem credible on the subject.
  12. I use this site often: http://www.ncbi.nlm.nih.gov/pubmed Some Lyme-related links I like: http://www.columbia-lyme.org/ http://www.ilads.org/lyme/about-lyme.php http://jemsekspecialty.com/lyme_detail/ A prudent course of action might be to record your health symptoms and pair a clinical assessment of those symptoms with any testing that might confirm a diagnosis or rule it out. For example, you cited OCD and rashes, but you also mentioned you are "tired out all the time" and have occasional loss of appetite. If you start with the basis that you are a health normal person, then any symptoms you have may be helpful in identifying a possible infection. Keep a journal of your health symptoms and note the frequency and severity of the symptoms. When you see a doctor, a doctor worthy of your cause will be interested in the journal. You could also seek some inexpensive blood analysis to look for any indication of disease or infection. In my case, a simple white blood cell test repeated over time suggested a systemic and chronic infection process. Pursuing a cure with or without health insurance is indeed possible, and you are already on the right path by recognizing your health symptoms and asking questions and looking for answers. Keep doing so until you are healthy. As others here will tell you, finding a cure can take a lot of time, money, and effort. Stay vigilant and good luck!
  13. You may want consider Lyme disease and possibly another tick-borne infectious disease like Ehrlichia or Bartonella. In some cases, Lyme disease produces a ring shaped rash called Erythema Migrans. Ehrlichia and Bartonella also can produce rashes in people however the appearance of these rashes will differ from Lyme disease. I mention these three diseases because they are common co-infections for a tick bite, and you cited your rashes appear different (rings then smaller with no shape). There is a lot of information about Lyme disease on this board for you to consider, including neurological symptoms of infection. A Lyme co-infection panel from Igenex labs is what I would pursue with your doctor, and it would show any antibodies your body is making to the three diseases I mentioned. If it was ringworm, the rash would likely become itchy and scaly, and spread until treated. A dermatologist can easily diagnose ringworm and can also perform a skin scrape to confirm.
  14. msimon3

    negative lyme and strep test

    Do you recall which bands were positive and which lab you used? If you were positive on Lyme, you might want to focus your efforts there. Here is a list of common coinfections: https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/ There are tests for these coinfections and some of these tests have specificity (false positive) or sensitivity (false negative) percentages that should be considered with any result. One line of testing that was very helpful for us was to run monthly red and white blood cell panels. We saw a trend in those test that indicated a sustained infection, and we eventually hit on a treatment that reduced the symptoms and also indicated resolution of infection on the white blood cell panel.
  15. Lyme disease can manifest in this way as well. It is called neuroborreliosis when Borrelia infects the nervous system, and tics can develop as a result. Some antibiotics have poor penetration into the central nervous system, so you may want to schedule another appointment with your doctor and get an antibiotic appropriate for a 4yo with good CNS penetration and good efficacy against Borrelia. This resource might be helpful: http://www.ilads.org/lyme/ILADS_Guidelines.pdf Modern research shows that Borrelia can be resistant to treatment, so extended antibiotic therapy may be necessary. If you doctor doesn't 'believe in chronic lyme disease' then you need to research this issue for yourself and perhaps find another doctor if necessary.
  16. msimon3

    No tics with fever

    We noticed the same thing. Tics would stop or decrease dramatically during onset of fever and illness.
  17. Lyme remains a clinical diagnosis because there is no test where you have both high sensitivity and high specificity when measuring the presence of Borrelia in the body. The commonly used tests ELISA and Western Blot measure antibodies to proteins and can suffer from false negatives due to either low amounts of antibodies or a narrow interpretation of what is considered an infection. Less common are PCR tests which measure the presence of Borrelia DNA directly and they can suffer from false negatives due to the lack of DNA captured in a sample. Antibiotics can be immunosuppressive, so if you intend to take the ELISA, EIA, ELFA, or Western Blot tests then you run the risk of false negatives due to low amounts of antibodies in the blood. If you intend to take the PCR test, you run the risk of a false negative due to lack of DNA captured in the sample ostensibly because you are killing the Borrelia with the antibiotics. In either case, perhaps schedule the tests out a week or two after the cessation of antibiotic therapy.
  18. msimon3

    PANS or TS? Please help

    The severe and rapid onset would make me think it was related to an infection. Have you had any general blood work done, like red and white blood cells? Are there any other symptoms that might indicate Lyme disease (e.g. known tick bite, lethargy, rash, joint pain) ?
  19. Steroids are immunosuppressive. Seeing a decrease in symptoms while on steroids, and then seeing an increase in symptoms off steroids may be an indication that the symptoms are caused somehow by an immune process and/or infection. Severe tiredness is one clinical sign of Lyme disease. Has your DD been tested?
  20. Our Lyme DS had high lymphocytes and low neutrophils for many years across several readings. At first doctors were somewhat dismissive about those results, but after a long span of time they stood as a metric to measure the success of the Lyme treatment. We stopped treatment protocol when tics subsided and then we measured WBCs again -- lymphocytes and neutrophils were both normal. For us, those WBCs were a good indicator of immune activity against the Lyme. If you feel the same, you may want to consider the efficacy of current treatment protocol. We modified ours over time when no changes were seen. While we tended to use protocols that used multiple antibiotics to hit the various forms of Borrelia, the last protocol we used employed Doxycycline + Flagyl which I feel was to most successful in killing the spirochete and cyst forms at one time.
  21. You are in the right place. You will find a wealth of information in this forum, and many people who are, or were, in the same situation as you. Lyme disease is a big deal. Borrelia are exceptionally good at evading our immune system and persisting through antibiotic treatments. How we perceive and treat Lyme disease is an even bigger deal. The medical community is split -- many doctors follow a 20 year old treatment protocol that many say is outdated and does not work while other doctors point to new research and treatment protocols that they say is more enlightened and appropriate. Watch "Under Our Skin" or read "Cure Unknown" for a primer on the split and controversy. Keep in mind that there is no single test that definitively says you have Lyme disease or not. The available tests have potential for false positive results and false negative results in some cases. Lyme disease remains a clinical diagnosis based on the assessment of a doctor. Therefore, finding a reputable and informed doctor is essential. If the tics are indeed caused by the infection, they may be a helpful gauge in monitoring the effectiveness of a treatment protocol. It is natural to be cautious about giving antibiotics -- most parents don't want to give their child medication without considering the consequences. Certain antibiotics have more potential for risks and side effects than others. However, the risks of not treating Lyme disease need to be considered. Lyme disease can be persistent, creating chronic suffering. It can also be pervasive, creating crippling effects on health. Many on this forum have had to make the same decision as you, and for that reason you will find a lot of empathy and support here. You will also find many who wish they would have discovered the cause of the disease sooner so they could treat it sooner and possibly avoid the complications of persistence. My advice is to start the treatment recommended by your doctor, hope for the best, and plan for the worst. Search this forum for LLMDs in Florida or create a topic with that subject and ask folks to private message you with names of doctors they recommend. You may need to pay out of pocket in some cases but it will be worth it to know that the doctor is free to pursue the right treatment without influence from health insurers. As aba mentioned, you may need to travel but it will be worth it to find the right doctor and not waste any time.
  22. msimon3

    PANS + Lyme + manganese?

    You may want to consider limiting your intake of manganese. New research suggests Borrelia use it to survive: http://www.whoi.edu/oceanus/feature/scientists-find-surprising-lyme-disease-bacteria-has-quirky-needs
  23. msimon3

    Help with Lyme treatment

    Lyme at any age can be a challenge, but at age 3 there is the additional challenge of choosing the right antibiotic for someone so young. Each antibiotic has a recommended age range for proper use, and there a fewer antibiotics available for a 3 year old than a teen or adult. Moreover, many doctors select antibiotics with a balance of safety, cost, and effectiveness, and then introduce new antibiotics if the prior antibiotic does not seem to work. Augmentin is a common antibiotic used for many infections, primarily because of its safety, cost, and effectiveness. I think it might be a stretch to claim that it is not a good Lyme drug in general but it may not be effective for everyone. Here is an interesting study showing the in vitro effectiveness of a set of commonly used antibiotics for Lyme disease treatment: http://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR Ultimately, your friend should see a good LLMD with pediatric experience. You could poll this forum for recommendations in a certain area (e.g. NY, CT). Dr. Jones in CT would not be too far from the doctors you mentioned, and he has a history of working with children and Lyme disease.
  24. msimon3

    Claritin for Lyme, anyone?

    Really interesting. Hopefully Claritin will be useful in curbing Borrelia. I wonder if the Borrelia will merely morph into cysts when denied Manganese: http://www.ncbi.nlm.nih.gov/pubmed/14961976
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